Lots of updates. Busy week.

I updated our facebook page with exciting news a couple of days ago, but neglected to post a blog about it.  For starters, UPS dropped off this big brown box a couple of days ago.

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What was in this large box???

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One of the items we have been fundraising for is the Panthera ultralight micro wheelchair.  This chair costs ~$6,000 new.  We were able to connect with another SMA family who was selling their gently used Panthera wheelchair (which saves money for us to use for purchasing other equipment and covering expenses).  Alexander has been loving this chair so far (and so have Jamie and I).  It has been amazing to see him using it.  The chair is allowing him to act like a normal 2 year old, who can explore and be curious.  It is so light, he can push himself where he wants to go.  It is also very easy for us to transport.  We took Alexander to the university yesterday to drive around and say hello to some of the people who have donated to purchasing it.

This has been a very exciting week for the Boggs household.  School started back for Alexander’s two older brothers, Owen and Ethan.  We had meet the teacher night on Tuesday, and Alex got to tag along in his adaptive stroller.  We are slowly seeing the difficulties that Alexander is going to face being in a wheelchair.  There are so many things the average person takes for granted, like simply navigating in and around buildings.  For Alex to even get into the building, he would need someone to hold the doors for him, as there are no access switches that open the doors.  We were walking around the bottom floor of the school looking for the accessible route to get to the second floor.  Finally we stopped and asked a teacher who told us we would need to get a key to use the elevator on the other side of the building to get to the second floor.  We tracked down a key, only to find out that we would have to ride the elevator in complete darkness because the lights had went out and not been repaired.  This was a very eye opening experience for us.

Big brother Ethan started first grade and biggest brother Owen started 2nd grade this week.

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Also this week we received a denial letter from SSI (disability).  Alex was denied disability benefits due to Jamie’s income.  We expected to be denied, but it is still disappointing all the same.  Now that we have the denial letter, we can start the process to try to get a medical card for him.  It seems like everything takes so long.

We contacted our neurologist to get a referral to a SMA clinic in Columbus.  We are waiting to hear back from them because insurance has to authorize it.  Again, more waiting!!

We submitted t-shirt and tote bag orders to the printer today!  They should hopefully be ready in about 2 weeks.  I’m excited for everyone to get their Action For Alex gear!  We’ve had a lot of people purchase bracelets as well!  The outpouring of love and support from the community has been amazing.  Words can’t say just how much we appreciate everyone who is rallying behind our little guy!

 

 

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